In Loving Memory of Cindy Duehring

Held Captive in Her Own Home
(Part 3)

Despite the lengths she must go to just to get through a day, Cindy has maintained her trademark sense of humor, Jim and her parents say, even though it literally hurts when she laughs.

"Her personality, I don't think, has changed at all," said her mother, Jan Froechle. "She still has that sparkling wit. It's just amazing that she can keep her sense of humor. I marvel at that."

It helps to have a supportive husband and family (she regularly corresponds with her sister in California) who have adapted to a lifestyle that is unusual, to say the least.

When Cindy and Jim first married, they were able to live in the same house, although they had separate bedrooms. Jim was a Lutheran minister for five years, and during that time Cindy became more and more sensitive to everything, including him. He had to stay away from her on Sundays, because of all the perfume he brought home from church.

Now, Jim can no longer even sleep in the house during the week because Cindy gets sick from the perfumes and detergents that cling to him after a day at Trinity Christian School, where he has taught in Williston for two years. So he rents a cabin-like building about a block down the hill from his house. During the week, Jim works and sleeps in the cabin, which is also the place Cindy receives faxes and mail. He is only able to visit Cindy on weekends, and they have to communicate by writing notes to each other because the sound of his voice causes seizures. But Jim said he's comfortable with the balance he has struck between work and his wife.

"I'm pretty happy teaching, and given her health, we just can't expect more right now. At least I get to see her and we can interact. That might be hard for people to understand -- (but) you have to walk in my shoes and realize what we've gone through over the past 10 years."

What they've gone through is lots of laughs, but also lots of losses.

"It's something you grow into," Jim said. '"It didn't happen overnight. If all these things happened overnight, it'd be even more overwhelming."

He said the toughest adjustment is feeling like he lives in two different worlds.

"Another hard thing is feeling like things are out of your control. I mean, your wife is sick and you can't really help her. Another really hard thing is if I come into the house and unknowingly cause a seizure. And then I have to leave because I'm making her sick."

And what do their friends and neighbors think? "Some people understand it and some people, it's hard to understand," he said. "A lot of times people feel uncomfortable even talking about it... I think for some people it's a big mystery."

Up until recently, Cindy could have visitors only if they followed an extensive list of instructions. But now she's so sick that it would take a total lifestyle change for several months for most people to be "clean" enough to enter her house, so her only visitors are Jim and her parents, who regularly use special hair and personal care products. It makes for a lonely life.

"Much in my life is extremely hard and painful," Cindy said. "But that doesn't mean there aren't good things, too. I make every effort to look for, focus on, and enjoy those good things no matter how small. Making the continual choice to be thankful for what I do have, rather than focusing on my losses, is extremely important for me to keep from being depressed."

Her work

Cindy tries not to allow herself time to dwell on her illness by busying herself with her work, even though it takes a heavy toll on her health.

In 1986, she founded the nonprofit Environmental Access Research Network, which is now the research arm of the Chemical Injury Information Network. EARN, which is largely run by Cindy, the director, is considered the world's leading support advocacy organization for the chemically injured, serving members in 34 different countries.

Cindy has built an extensive private library on chemical injuries, and she provides copies of studies and government reports to laymen and professionals. Every month, her organization is contacted by at least 150 new people looking for information on chemical sensitivities and chemical injury issues; some of them referred there by government agencies.

Every other month, Duehring publishes Medical & Legal Briefs: A Referenced Compendium of Chemical Injury, a newsletter in which she summarizes some of the most pertinent studies, government reports, legal cases and peer-reviewed studies from conservative medical literature relating to chemical sensitivities.

She also writes a monthly profile on studies and government reports for a monthly newsletter published by the Chemical Injury Information Network.

In 1993, Cindy and the CIIN director were commissioned to write a white paper -- an authoritative, detailed report prepared at the request of a government body -- called "The Human Consequences of the Chemical Problem." It was presented to Vice President Al Gore and First Lady Hillary Rodham Clinton.

So how does she do it all? Especially when she can't use a telephone, fax machine, typewriter or computer?

In longhand, Cindy writes all her stories, letters and directions for several people she has hired to do her typing, copying, faxing, computer work and leg work. She also relies on volunteers, including her family (her mother frequently gets articles from the medical library in Bismarck). Her husband stops by the house once or twice a day with her mail, faxes and phone messages that pile up in his cabin/office.

But it's not as simple as that. Her toxicology books, medical and legal journals, government reports and medical studies must be stored in large, walk-in closets with carbon air filters. Aluminum-lined banker's boxes and tin canisters serve as file cabinets, reducing her exposure to paper, ink and copy fumes.

She tracks medical literature and relies on volunteers and contract workers to track legal cases and send her the tables of contents from medical journals in medical libraries around the country. Every month, she searches the electronic library of the U.S. National Library of Medicine through a contract worker.

And for all this, she gets paid exactly nothing. CIIN's bylaws forbid her from receiving a salary, as an officer of a nonprofit corporation.

Her lack of distractions (like a ringing phone, wailing radio or tempting television show) and inability to leave the house has been beneficial in at least one way. "Many clinicians have told me they envy the time I have to continue studying and digging in the medical literature," she said, "and researchers have told me they especially appreciate my work because I have the time and freedom to pursue and track a large number of issues rather than being locked into one discipline."

Her "breaks" usually involve reading the many news magazines she subscribes to (and devours from front to back); rereading cards and letters; reading novels "that are fairly certain to have happy endings" or reading the Bible and praying.

What the doctor says

Of the thousands of patients Gunnar Heuser treats at his private practice north of Los Angeles, most of them either think they're crazy, have been told they're crazy, or actually are a little bit crazy.

But, he says, almost all of them are genuinely sick.

"I've come across very few people who are trying to put me on," said Heuser, a practicing physician and fellow of the American College of Physicians and assistant clinical professor of medicine at the UCLA School of Medicine.

They come to him to find out whether they're chemically sensitive or chemically injured. His "work-up" includes immune function tests, blood tests, skin biopsies and brain scans -- tests he says most physicians neglect to do.

"They aren't easily persuaded," that the people are ill, Heuser said.

He said he sees highly successful people -- lawyers and doctors -- become chemically sensitive, fall apart and come to him for help.

"Then you believe," he said.

Of all the patients he's seen, he estimated about 100 are as sick as Cindy, living in total isolation.

"Some people take to the mountains," he said, or go to a "safe" community. "People become hermits."

But not Cindy

"Most people give up and become disabled... there are very few I can think of who are that sick and are that productive."

Heuser said often chemically sensitive patients "come across as crazy people" because the chemicals have affected their brains and the medical profession sometimes reinforces that assertion. But he said Cindy has a "very superior mind."

"I have known so many people with chemical sensitivities give up and stop doing things and ... they are like going into a place where there are mirrors all around them. They become totally self-centered. They don't reach out and they don't do anything. Of all the people I know -- and by now I know thousands -- she has not talked about her chemical sensitivity. She talks about science and scientific methods... She is a resource for thousands of people. She is totally unique as far as I'm concerned. She has a warm, wonderful laughter, melodious voice; she makes sense every time she talks to you. She's not crazy. She's rational, she's critical. She has enormous qualities as a human being."

In fact, Cindy was reluctant to talk about her illness, because she didn't want to tarnish the joy of winning the award, which, she noted, she won for her accomplishments, not because she is sick. Although she has been interviewed as an expert on chemical injuries many times, this is the first time she has agreed to a "personal interview" since 1990.

How extensive is her knowledge of chemical injuries? "I would trust her to write a medical article in a medical journal," he said. "I think she could probably outshine some of my colleagues. ... She gives you a better answer than anybody else I've ever dealt with."

Heuser often turns to Cindy when he's looking for research or information on specific topics. He said her personal library on chemical injury and sensitivities is the most extensive he knows of.

That's why he nominated Cindy for the Right Livelihood Award, which was introduced in 1980 to honor and support people working on holistic solutions to world problems. Every year the awards are presented the day before the Nobel Prize presentations.

Cindy said she was "stunned, excited and extremely grateful" when she was selected to receive the award and hopes it will help call attention to chemical injuries.

She must go on

Up until early spring of this year, Cindy relied heavily on the telephone to work. Then she began having audio-induced seizures and had to stop, which was the hardest adjustment she's had to make. For this interview, Cindy answered a faxed list of questions by writing out her answers. Jim faxed the answers.

"I am a very verbal, people person and I love to laugh and find the humor in things," she said. "Talking and working on the phone was a tremendous outlet, escape and coping mechanism for me. This latest step downward in my health ripped an unbelievable hole in my life."

She had devoted three days per week to telephone work, and during those business hours she said her phone rang nonstop.

"I was utterly devastated," she said. "It's the closest I've ever come to saying, 'This is impossible, I give up.' Yet the letters were still pouring in, the phone messages were piling up, and the tremendous need was still there, and I knew if I quit I would go into unbearable depression."

So she revised her brochures and made new order forms that would allow her to continue providing the same services entirely through mail order.

Cindy's work not only helps others who are sick, (some people with severe MCS become homeless or live in tents or shacks) but also helps her.

"I do my level best to concentrate on other things to distract myself from the pain and to keep going," she said. "The work I do is one of the essential ways that I cope."

She also relies on her religious faith. "I am continually praying to the Lord for strength, as I am well aware of my weaknesses and my health situation far surpassed my ability to cope long ago," she said.

Although she knows her sickness has enabled her to help many others who are similarly stricken, she says, "I don't believe I'll be able to see the good in the sheer extremeness of my health condition and the senseless pain I must cope with until I die and gain the perspective of eternity. I am thankful for the good that has come of this in my ability to help others, but I am well aware that I could have done even more ... if my poisoning had only been less severe."

Jim said his religious faith has been strengthened, too.

"I think you become more and more reliant upon Him because you can't rely on your own strength, you really can't. Because it really is overwhelming."

Cindy said she often thinks of Martin Luther's wife's last words on her death bed: "I shall cling to Christ like a burr."

"When I am tempted to feel sorry for myself, I think of those who are suffering unspeakable deprivations and tortures in prisons in other countries for their faith or political ideals, and I feel ashamed," she said. "If my home is my prison, and my body is the master jailer, I still have tremendous freedom and comparable luxuries only dreamed of by them."

And so she continues to silently toil away, every day. Dec. 8 will be no different, as she goes about her daily routine -- except for one. Jim won't be there to deliver her mail. He'll be in the Swedish Parliament in Stockholm, accepting Cindy's award for her.


From Bismarck Tribune

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